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Huntington's Disease Association

The Huntington's Disease Association is a UK registered charity which supports people affected by Huntington's disease (HD). We also provide information and advice to families, friends and healthcare professionals who support Huntington's disease families.

Contacts details

Telephone number: 0151 331 5444
Website address: https://www.hda.org.uk

Huntington's disease is an illness caused by a faulty gene in your DNA (the biological 'instructions' you inherit which tell your cells what to do). If you have Huntington's, it affects your body's nervous system - the network of nerve tissues in the brain and spinal cord that co-ordinate your body's activities.

Huntington's can cause changes with movement, learning, thinking and emotions. Once symptoms begin, the disease gradually progresses, so living with it means having to adapt to change, taking one day at a time.

Living with Huntington's disease can be very challenging. Getting the right information and support is vital and we're here to help.

We improve care and support services for people with Huntington's disease, educate families and professionals, and champion people's rights.

If you've recently found out about Huntington's disease in your family, it's likely you're experiencing a range of very strong emotions.

You may have:

  • recently found out that Huntington's affects your family.
  • had a recent diagnosis from a medical professional - this could be following a family history of the disease, or it may be that you never knew it was in the family.
  • had a positive test for Huntington's from a geneticist, but you're not showing any signs.
  • noticed that symptoms are starting having already known you carry the Huntington's gene.
  • found out that someone you care about or their family is affected by Huntington's disease.

Whatever way you've come to find out about Huntington's, you may have many strong feelings. These could include anger, denial, sadness and fear. You could also be feeling confused or anxious and not sure what to do next.

It's important to know there's no right or wrong way to feel. Everyone will react differently to finding out about Huntington's and that's ok.

Where do I start?

You may have lots of questions but you're not sure who to ask.

Our Specialist Huntington's Disease Advisers can offer advice and information, and let you know about local services and support groups. If you haven't already made contact with your local Specialist Huntington's Disease Adviser we would advise you to do so.

More information

Based: Nationally based
  • Everyone, regardless of age

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